Diagnosed with CIS today, more tests to come - things to know/ask?

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Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Fri Apr 26, 2019 3:28 pm

My neurologist wanted me to look more into what CIS is, after ruling out everything that could've caused my numerous symptoms and increasing disability over the past week (first time this has ever happened). My C-Spine MRI yesterday showed a signal change in my spinal cord, so today he started me on a high dose of steroids to try to break the symptoms.

I've read that the probability of progressing past CIS and into MS is 60-80% if the MRI showed damage. For those of you who started out with CIS and were later diagnosed with MS, how long was it until your second set of symptoms started? And did your doctor start you on MS meds from when they first diagnosed you with CIS, or did they wait until your second episode?

I'm really lost at the moment. It's been a rollercoaster of emotions this week, since all of it started 7 days ago. Is there anything that I should definitely know, or any questions I should ask when I see my doctor again next week? He's going to have an MRI of my brain done next, and probably a lumbar puncture at some point too.

At this point I'm stuck between half relieved that I finally have a possible answer on why I haven't had control of parts of my body for the past week, and dreading my life to come if I really do have MS at 29 years old. Any advice on things to ask for or to read up on would be appreciated.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Scott1 » Fri Apr 26, 2019 5:39 pm

Hi,

One upon a time MS diagnosis was broken into "clinically definite" or "probable" MS. In 2001 that changed and a new set of rules (that have been revised about three times since) called the McDonald criteria became the accepted benchmark symptoms for diagnosis.

Those criteria gave three broad classifications-1) Clinically isolated syndrome (a first attack that doesn't meet all the criteria)
2) Remitting relapsing MS (a relapse that lasts at least 24 hours followed by a full or partial recovery. This can, over time develop into secondary progressive MS) and 3) Primary Progressive MS (a slow progressive neurological decline without obvious relapses)

You can have clinically isolated syndrome and it may never develop into recognisable MS.

The cardinal feature of MS is the appearance of lesions that are scars on the brain and/or spinal cord called sclerosis.

To confirm an MS diagnosis, the lesions need to be observed in more than one location in the brain and/or spine (Central Nervous System). This is known as dissemination in space.
In addition, damage from the lesions needs to have occurred at different points of time. This is known as dissemination in Time.
Lesions must demonstrate time and space dissemination.

In the most recent revision of the McDonald criteria (2017) an MRI can be used to determine dissemination in time. Before that, you really needed two MRI's at differing times.

If your neurologist wants to do a lumber puncture, he will be looking for the appearance of abnormal proteins in the spinal fluid. If he finds bands of these proteins then dissemination in time is assumed.

If an MRI didn't confirm it and you don't have the bands then you don't meet the dissemination in time criteria. If you didn't meet both the time and space criteria then your diagnosis would remain as clinically isolated syndrome, otherwise it is MS.

Hope that helps.

Regards,

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Fri Apr 26, 2019 7:02 pm

Yeah, he did mention that it has to happen two separate times and in two separate places. That's one of the reasons he's getting a brain MRI done, to see if there's damage there as well (I had a clean brain MRI a few years back in one of my migraine checkups, so any spots there would be something troubling and certainly worth seeing if they're brand new or a bit older), and he mentioned getting another MRI of the same place later in the year to see if there were any changes.

The spot on my spinal cord was faint, but there, so he's left me with either CIS resulting from a virus (which will never come back), or CIS as a first step into MS. He's crossed everything else off the list. I've never had a C-Spine MRI done before, so we have no earlier record to compare this one to.

In the meantime, while we're waiting to see if the steroids work or if the brain MRI shows more damage, I'm just terrified. I had no idea something like a passing virus could cause this. While I'm really hoping that's the case rather than the beginning of MS, not being able to walk for more than about 45-60 seconds as of tonight (and struggling with even that) is horrifying, especially as someone who's used to commuting 30 minutes to work every day by bike.

If the brain MRI shows damage as well, is it easy to see how recent it is, or can it be difficult to tell how long ago lesions appeared? And does CSF from a spinal tap always show banding if you have MS, or is that just a possibility?

Thanks for your very detailed response!

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Scott1 » Sat Apr 27, 2019 1:10 am

Hi,

The best way to do an MRI is with a contrast (usually Gadolinium). The contrast shortens the relaxation rate of tissue. A new lesion shows up as a bright area. Old lesions don't so the scan can help with the dissemination in time test. Essentially, the scan is to determine the integrity of the blood brain barrier. The neurologist can't use the MRI to determine how, if you have it, your MS might develop. It's not a predictive tool.
Banding is typical of MS but both lesions and banding can have other origins. The neurologist will be doing two things-1) eliminating the chance that it might be something else and 2) drawing on his past experience.
An MRI of the spine is a good idea. There is a better correlation between spinal cord damage and MS symptoms than there is with lesions on the brain.
The neurologist will be looking at a whole range of symptoms. That's why he scraps the sole of your foot, flexes your leg and wave his finger around in front of you. It will be the sum of everything he does that determines his diagnosis.

When you say you have trouble walking, do you mean because you are fatigued or are the muscles just not responding?

Regards,

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by NHE » Sat Apr 27, 2019 3:46 am

Hi AmbiCat.
Welcome to ThisIsMS. A deficiency in vitamin B12 can cause demyelination of the spinal cord. Have you had your vitamin B12 level tested? If so, what was the value (usually in pg/mL)?

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Sat Apr 27, 2019 9:54 am

He tested everything. I had 3 different blood draws this week for pretty much anything that could cause similar symptoms, including B12. I don't know what the exact results were myself since everything was so rushed and I haven't gotten them in the mail yet, but was told every blood test came out normal. He did an ANA blood test yesterday which we don't have the results back for yet.

As said, the spinal MRI of my neck did show a faint lesion (it was with Gadolinium). He's focused on scanning my brain next since we have something to compare that too, and my lower back alone (despite having massive pain there on Wed/Thurs, but only in one localized spot) wouldn't explain the upper body numbness I've had. The neck lesion does, as would brain spots if there are any.

The numbness moves around and tends to get worse throughout the day/night, but from my diaphragm down to the start of my thighs has never become less numb since Monday. I literally can't feel pain there. My legs were partially numb, for the first time, when my neuro brought me in for an urgent consult after the MRI results yesterday. I couldn't feel the pricks from his pain test until close to (left leg) or past my knee (right leg) when he pricked me going up from my feet.

When I say I have trouble walking, I am fatigued but it's like my legs just don't want to listen. I get random tremors in them, especially my right leg, which only last for a couple seconds, but they disrupt my balance so I haven't been able to walk much since yesterday. I have to stop and hold on to something until they dissipate.

I walk into things and don't even realize it until I hear the sound, because I can't feel much if it's my feet that I'm hitting something with. I have enough feeling to stand and everything (all the numb areas can still feel SOME degree of pressure, just not any pain in certain areas and very low sensitivity to temperature in a lot of places), it's just hard moving around, and the tremors really scare me. I'm not having tremors in my hands, but they're stiff and hard to use, particularly at night.

Also finding it really hard to eat, but that's probably stress even though I don't usually lose my appetite when I'm stressed. I forced myself to eat yesterday twice, once to get the Dexmethasone down.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by ElliotB » Sat Apr 27, 2019 10:18 am

I know this is a very difficult time for you. I would like to make just a couple of quick points to help you out:

"dreading my life to come if I really do have MS at 29 years old."

Life goes on and can still be pretty good even with a MS diagnosis. Most with MS have pretty normal lives with only minor inconveniences. And yes, there are some who aren't as lucky. BUT...

There is so much you can do for yourself health wise to help deal with MS.


"finding it really hard to eat"

I have been dealing with this issue for a couple of years.
I forced myself to eat 2 meals a day until about 6 months months ago. Now I only eat when I am hungry which is no more than 1 meal a day and sometime 1 meal every 2 days. I did a lot of research on this topic prior to starting this approach and it turns out it is a really healthy way to live! Check out the web and YouTube, you will be pleasantly surprised by the results.

Good luck!

One more thing, you are among friends on this site that you can count on to help you out when you need it with just about any issue!
Last edited by ElliotB on Sun Apr 28, 2019 4:35 am, edited 1 time in total.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by lyndacarol » Sat Apr 27, 2019 12:39 pm

"He tested everything." When he tested your vitamin D level, what were the number results and the units of measurement?

Vitamin D in clinically isolated syndrome: evidence for possible neural protection. (2016)
EM Mowry, D Pelletier, Z Gao, MD Howell, SS Zamvil, E Waubant
http://www.ncbi.nlm.nih.gov/pubmed/26518224

CONCLUSIONS: Vitamin D status may impact neurodegeneration after CIS, although these results should be replicated in a second study. If confirmed in clinical trials, vitamin D supplementation may reduce long-term disability.

If I had clinically isolated syndrome with magnetic imaging diagnostic of multiple sclerosis, I would take vitamin D 10,000 IU daily: Yes
Multiple Sclerosis Journal, 2013
Jorge Correale
http://msj.sagepub.com/content/19/2/137.full.pdf

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Scott1 » Sat Apr 27, 2019 2:18 pm

Hi,

It sounds like your neurologist is being thorough. Not all serum blood tests tell the whole story so, depending on what he concludes, he may arrange more tests.
Uncertainty is always stressful. Given your symptoms, I think you're approaching it the right way.

Regards,

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by NHE » Sat Apr 27, 2019 2:23 pm

lyndacarol wrote:
Sat Apr 27, 2019 12:39 pm
If I had clinically isolated syndrome with magnetic imaging diagnostic of multiple sclerosis, I would take vitamin D 10,000 IU daily: Yes
Multiple Sclerosis Journal, 2013
Jorge Correale
http://msj.sagepub.com/content/19/2/137.full.pdf
Only with sufficient magnesium supplementation, e.g., 400-600 mg magnesium glycinate split into two doses per day.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Zyklon » Sat Apr 27, 2019 5:03 pm

Hi,

I have a very similar story. Please read my hello thread. It will be better for you to take care of your body as if you have MS. Taking D3 with magnesium, staying away from stress, eating healthy, make your mind and body happy.

With some self-care and luck, MS is a manageable disease. Kinda like a journey.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Sat Apr 27, 2019 7:21 pm

Thank you guys for all the support. I don't remember if Vitamin D is one of the things he tested for, but I get tested for that on a yearly basis since I was deficient about 7 years ago pretty badly. I also make sure to take multivitamins with D3 in them, but I'm outside a lot more than I used to be now that I bike to work even in the winter regardless.

The hospital also tested for anemia since I was pretty badly anemic a few years ago, but I figured it would come out normal (and it did) because I've had none of the same symptoms I know from anemia - and absolutely no symptoms period before last Saturday.

I've had Fibromyalgia since I was 15, so I'm used to relapses or flares from that and am pretty vigilant about noticing them. I'm also very cognizant of staying physically active and eating healthy - I know from growing up with FM that not being active makes me feel worse pretty quickly, but if I stay active it keeps the exhaustion and pain at bay. I eat healthy breakfasts, bring my own easy-to-make lunches to work, and cook a couple times a week unless the FM is flaring, in which case I do what I can.

I felt perfectly okay Friday and just wasn't on Saturday, spiraling ever since. The tremors in my right leg today almost kept me from walking period. A family member took me to the store to get some easy-to-eat things that might help me eat more even if I'm not hungry, and I was hugging the shopping cart the whole time because I was getting tremors in the bottom of that leg with almost every step.

Still having to force myself to eat. Can't eat more than twice a day (and one of those a day has just been my family forcing me to eat something they get me), but at least I'm eating a meal to get the pills down. Fingers aren't as stiff tonight, so I'm holding out hope that these steroids will work without me having to go to the hospital for an IV on Monday - it's just the second day of them so far.

My neurologist has been really great at helping keep my very stubborn migraine disorder under control over the past 5 years, so I'm confident I'm in good hands with him, especially with him pushing out all the tests so quickly after these symptoms started.

I have a very physically active job, so I'm going a bit stir crazy being confined for a whole week, and I'm hoping no more steroids are needed after this so I can at least get back to work and figure out what to do in case the symptoms come back afterward.

Sorry about the walls of text >.<. I haven't really told many people in my life because it's such a serious thing, and I've been so terrified this whole week. Pretty much only a couple family members know, my boss, and a friend from work. I went in for a mandatory meeting at work on Thursday (it was a seminar-like thing for all staff, not actual work, so I was allowed to go). I ended up totally breaking down after the meeting because I couldn't walk well or use my hands much at all, and coming clean to two of the higher ups on what the diagnosis was leaning toward. That was, of course, before I found out the MRI test results, which only made the anxiety worse later that day. My boss has been totally supportive, but I'm an overachiever at heart so I feel extremely guilty for being out of work.

I think I'll at least feel better once I can start getting back to work once the symptoms subside, even if it may return. This has definitely been the scariest experience of my life, and there's a massive difference from just being too tired to get out of bed (Fibromyalgia) to literally not being in control of your own movements. I couldn't even turn my toothbrush off last night, and started crying when I couldn't open a bottle of water. I just want this episode to end, whether it comes back or not.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by lyndacarol » Sun Apr 28, 2019 12:30 pm

AmbiCat, you wrote, "I've had Fibromyalgia since I was 15,…" I suspect you were vitamin D deficient in your teens:

Misdiagnosed Vitamin D Deficiency (9 min.)
with James E. Dowd, MD, FACR, ABIHM:


Interviewer: Because of what you said where a lot of doctors still aren't seeing this as a need to get tested for, vitamin D deficiency is probably still misdiagnosed as a number of other things… Is that correct?
Dowd: Yes, it probably is overlooked in a number of different diseases. Chronic pain, something that's rising significantly in the United States right now. There was a study that was done looking at chronic pain and they found that patients who had low vitamin D levels, below normal, were using twice as much pain medication as the patients in the pain clinic who had normal vitamin D levels. So there's a correlation there with how much pain you experience among patients with chronic pain.
@0:55 Another example of a disorder that is sometimes misdiagnosed and is vitamin D deficient is fibromyalgia, which is one of these chronic pain disorders….
@1:25 I'm not saying that everybody with fibromyalgia has vitamin D deficiency, but probably 70% do because 70% of the population is deficient.
@1:43 There are occasional patients with fibromyalgia where that is the primary driver of their pain and fatigue and misery; and when you correct that they get dramatically better.…
Interviewer: Could a person be deficient and not really know it? And is there any harm in that?
Dowd: In fact, most patients who have vitamin D deficiency don't know it – either don't know it because they don't know what symptoms are associated with deficiency, or they don't know it because they just feel fine and they've never measured… Symptoms unfortunately are often a fairly late sign in any disease process or deficiency or imbalance. Just because you don't have any symptoms doesn't mean that you're not at risk.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Sun Apr 28, 2019 2:40 pm

The vitamin D deficiency did indeed start after the FM, but it really only got bad during the year I was housebound (right after diagnosis), and again in my early 20s when I fell into a very deep depression as a result of how hard college was on my body - I had adjusted to FM by then, but since I was an overachiever back then as well I tended to still study very late, so it ended up taking a toll on me after a few years. When I withdrew from school, that's when the Vitamin D became very deficient rather than just low, so I was on a high dose of D3 for a couple of years. My D levels have been fine for the past 4-5 years, though.

The anemia required a ferratin infusion a few years back (ferratin was almost nonexistent, and my RBCs were very small compared to how they should've been), due to the fact that I can't stomach iron pills, and they weren't enough alone even with a lot of iron-enriched food, regardless, to stem the iron loss I was having. I'm on something that seems to have stopped the iron-deficiency now though, so I don't anticipate it coming back, but I still take a multivitamin that includes it, even if it bothers my stomach a little.

I'm very careful about keeping nutrients in mind nowadays, so I'm not sure if my past deficiencies made me more prone to developing this, but I'm sure the Fibromyalgia alone had something to do with predisposing me (I developed allergies, asthma, and severe migraines after the FM popped up, whereas I'd been healthy before).

As far as I know, those are the only nutrients I've ever been deficient in. Magnesium/potassium etc always checked out fine. I make sure to get outside enough, my multivitamin is meant for women so it has more than an adequate amount of D3 in it, and I eat iron-rich food as often as I can just in case. I don't take a magnesium supplement, but I've thought about starting one since the multivitamin only has 10% of the daily value, and I know it can be beneficial for FM as well.

The main thing I'm curious about as for when I see my doctor this week is whether or not people often go on MS medication after a CIS diagnosis, or if most neurologists wait until more damage or a second symptomatic episode starts. I've read starting medication early (when you first get diagnosed with CIS) can stave off early progression, but I'm not sure how fast this progresses (if it does come back and mean that I definitely have MS) if you don't start medication before the second episode - which according to my neurologist might not be known for another 6 months to a year from now, when more scans are done to compare the ones I'm having now to. Does it really just depend on what other scans show, and whether or not they can tell if some of the damage was older rather than from this current set of symptoms?

I'm less numb today than I was yesterday, so the Dexmethasone is definitely having an effect, but as it's the 3rd day out of 5, I'm not sure if it'll actually go completely away by the time the steroids are done - in which case I'll have to go to the hospital for IV steroids. I feel very weak today, and my grip is worse than yesterday, but maybe that's an improvement since I can feel my fingers more. My appetite is starting to come back, which could definitely be the steroids, but it's better than not eating regardless. The tremors in my right leg are much less frequent today too, but walking is hard because of the weakness still.

At this point I'll probably be out of work for a second week in a row, due to having to get at least the brain MRI done after Wednesday (I asked to wait since my insurance's new year starts on the 1st, and I'll already be paying off the old year's MRI for my neck) and not seeing my neuro again until Friday (there's very strict paperwork that has to be filled out by him for me to return to work because of FMLA laws, since this has been such a serious thing, but ofc some of it is stuff he really can't answer, since he can't definitively say that this will come back unless the upcoming tests say otherwise).

It's really difficult to still be this sick after more than a week, but I'm hoping by next weekend I feel normal again. Just still really stressed out and overwhelmed about all of this, and feeling guilty that my employer is likely going to end up shouldering at least part of the burden of my medical costs this year since I'll need a minimum of one follow-up MRI after 6 months.

Also, if it matters regarding medications, I'm already on Keppra and Lamictal (both anti-convulsants) for the past 12 years or so to help control the migraines, which I know can also help CIS/MS symptoms as well, and do plan on getting back on an antidepressant sometime this year.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by NHE » Mon Apr 29, 2019 12:37 am

I was symptom free for 8 years after my first attack and my second attack led to my diagnosis. As far as medication goes, I could have taken anything for those 8 years and, if I had, I likely would have concluded that the medication was really helping me. However, being symptom free for 8 years was just the natural course of the disease for me. I hypothesize that I would have done better by changing my diet, e.g., reducing sugar consumption, increasing omega-3 oil intake and eating more veggies. Many of the DMDs have fairly strong side effects. Once diagnosed after my second attack I chose to go on IM interferon-beta for 10 years. The side effects were horrendous for me. In my opinion it would be unfortunate for someone with CIS to go through that. A diagnosis of CIS is essentially the doc's best guess that a person has MS except that it's just their first attack so there is some doubt. Why get labeled as MS and go through all those side effects if it's just "a best guess" based on current symptoms and MRI results? Moreover, many of the DMDs are ineffective at slowing the long-term progression of disability. See Dr. George Ebers' video.



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